Tuesday, June 29, 2010

A Harsh Reminder

Yesterday morning I wrote "Positional Warfare" not realizing that I would experience this in the fullest just 12 hours later. It was harsh, and sudden and made me realize anew the potential agony and sadness of being on the spectrum. This is that story...Yesterday was the 1st annual TouchPoint Autism Services Golf Tournament. Dan Kelley (the father of the family that is in the video that I have linked to on the right bar) and the rest of the TouchPoint golf planning committee put on a fantastic event at the Glen Echo Golf Club which is the only golf course in the United States to host an Olympic event.

The format was a scramble and I was playing on a foursome. I arrived early, as usual, and didn't exactly know where to go once I was there. Once I saw someone I knew I simply followed them and then I was at the check-in table. Having never done a golf outing like this I had no idea what to do, and signing in was difficult because I didn't know what was coming. In the end all I had to do was give my home address, but my anxiety level was pegged to the fullest. Now, what makes this interesting, is that I have signed in hundreds of times at race tracks, but I know the drill there and this was new which meant unknown and the unknown is feared.

After barely surviving, ahem, after signing in I loitered about for a good 10 minutes and I truly didn't know what to do. I wondered if I should help out, but I would be clueless as to what to do or much less whom to help. Eventually I saw someone whom I've talked to many times in the past and then found out I was playing in his foursome and thankfully, truly honestly thankfully, he asked if I wanted to hit the range to practice.

Like a light switch being flipped from off to on I came alive. I talked about my "Great Sunglasses Experiment" and we bounced ideas back and forth. We talked about golf and the challenges of hitting the fairway (or at least my challenge to hit the fairway) and the love of the game. I made the comment that my golf game, "Is very much like Asperger's in a way. I'm either fully on or fully off." If my driving range time was any indication the day was going to be a "fully off" type of day.

As 1PM came the tournament started and I felt at ease with my team. I have spent time talking to two of them so adding a third person I didn't know wasn't that difficult. It helped that his sense of humor was much like mine so I was free from the stresses I had when I had signed in.

The story here isn't the round of golf, but I did hit a few good shots. No, the story here is about the social dynamic. During the round I was able to talk, and able to make witty comments. I wasn't fully there, but I was close to being in my presenter mode. Speaking just came naturally to me and there wasn't a second thought of what to say. Usually I only have this when giving a presentation, but during those 18 holes I was there.

After the round there was a dinner and this is where my story takes a sad turn. The tables were for eight which meant that it was our foursome and another team. As I sat down the other people introduced themselves and just like that light switch that had been turned on instantly turned off. Eye contact was impossible and words could not be found. In watching the room and everyone else there I could see that they didn't struggle like I was struggling. I was in a room full of people but I was alone.

I didn't want to be alone. I so badly wanted to say something, anything, but I never could find the right time to speak. As the noise of the room increased it became harder and harder for me to hear the words of the people at the table I was at. All the noise merged into one never ending string of words.

I'm afraid of how uncomfortable I looked because I was in the ultimate "Positional Warfare". Come to think of it though, I think I was mimicking a statue because there was little movement in my body.

With each second that passed I found it harder and harder to jump in. I didn't know what to do and simply wanted to cry. I can't be more honest about that. After feeling the freedom of being able to give presentations in rooms of 80 or more, and being unable to converse with just seven others made me sad. I often will forget that I am on the autism spectrum, but an event like this will remind me and it hurts, I can't lie.

After dinner, former NHL player and now NHL commentator, Joe Micheletti, emceed a live auction. There was only supposed to be one item, but he decided to give donate 2 New York Rangers tickets and a chance to meet him in the booth at that game. More money was raised because of this and I was moved. After the dinner I wanted to give him a book of mine to show my appreciation for that great deed, but I was still paralyzed.

I paced. I walked to the restroom with reason. I came back and sat back down. He was just seated one table over, but I couldn't. I still had not uttered a word for over an hour and as much as I wanted to just walk to my car and grab a book I walked to my car and drove off.

On my way home I felt like a failure: this regardless of the fact that I have had such a warm response from my presentations. I was sure that feeling would pass, but once again it was a reminder of the mind set a person on the spectrum can have and that is, "whatever is now is forever." I hope if you know a person on the spectrum you can understand the power of that line.

As I got home I was still angry with myself. I stormed through the house and opened my door and was then confused as to the small white box that laid upon my chair. I didn't remember buying anything on Ebay so I didn't think much of it and went on to check my e-mail. I looked at the small box again and I decided to open it.

I won't start tomorrow as I think it will be more fitting to start on the 4th of July. Independence Day. A fitting name for what I hope to gain in terms of eye contact.

Today may have been a harsh reminder of the challenges that I, and many other people on the spectrum face. I was, as usual, asking "why me?" on my way home and again I realize it's me because of what you are reading right now. For family, or friends, it is crucial that they understand what a person on the spectrum is going through. Through my up and down up day I hope I have given a unique perspective to the hazards of a social setting like a dinner that I was at. If I have, it made everything worth it.

Hey Aaron, I just wanted to say that I appreciate you being open and honest about your experiences. Although I've been in the field for four years I am continually learning from your experiences. I'm sad that you have to go through things like positional warfare but I love the way you describe it so others of us can hopefully help those in our lives that may experience similar things.

I have had very similar experiences at nearly every large dinner I have ever been to, whether at a conference, a retreat, or a large meeting at a restaurant. One of the worst parts for me is that I usually start out just standing there surveying the tables for a long time, not knowing where to sit, not knowing whether any of the seats are being saved, and usually not seeing anyone I know. I am pretty much lost until someone invites me to sit at their table, and sometimes I am in a bit of distress by the time that happens. Then I tend to just keep to myself unless the person next to me talks to me directly, then I will talk to that person. I cannot participate in group conversations (except in certain circumstances, in smaller groups, with slower conversations, when I know most or all of the people there).

I also can certainly relate to the part where you described not knowing what to do when arriving at an unfamiliar event. Been there, done that, many times. I appreciate your ability to describe these experiences so well.

thank you for this blog, you give me the feeling that i can look into my 14 year old sons head through you.i can see him struggle with the same issues you have, and maybe we should let him experiment with sunglasses as well. might give him a little confidence in his social interactions with other people.I sure hope it will work for you and will keep following this blog.thank you so much for sharing this.

Thanks for letting us in on the other side of the wall...Takes courage and strength...Just to let you know, I am not on the spectrum and I do always feel like that in social events..It feels horrible...I seem so ougoing but when it comes to that, people can't imagine what goes on inside...So I don't think it's only people on the spectrum but the evnironemental situations that create discomfort and I beleive many of us suffer from it but just hide it pretty well...

Keep up the good work, you are helping so many of us understand children, relaitves, friends and if we put efforts towards comprhending what goes on the other side of the wall, the wall won't be as big...

In my OT conference experiences, I had a few experiences like the scenario you described with the table of 8. However, I fought through my fears and talked. In fact, I could be at a table where I just knew a person or two out of 10. But, it didn't matter. I used my go-to questions and it worked like a charm. I didn't need to prepare anything because I heard these same questions over and over again.

Another thing, like the NHL player example you gave, I also had that kind of experiences when I attended OT conferences, too. I used to be afraid to speak to the presenters after their presentations. However, as I went to more of these conferences, I had the nerve to speak to the presenters AND give them my two cents. Again, it's something that takes practice and guts. In fact, I remembered I told myself during these occasions, "I AM NOT going to leave this conference room UNTIL I get a chance to talk to the presenter(s)."

A lot of it is really mind over matter. That said, I know it is easy to say and hard to do. So, keep trying and eventually you will succeed.

I actually enjoy the other people's conversations...and I'm a big people watcher. So I tend to amuse myself at these type of things. And if someone speaks to me...I ask them about themselves. "What (job usually) do you do?" takes ALL the pressure off me.

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Finding Kansas Revisited

To mark 10 years since I started writing my book I did a blog series with my thoughts from today on what I wrote then. This was the first time I ever read anything I had ever written.

The Sunglasses Experiment

I ran a sunglasses experiment to judge why eye contact is so difficult. I wore them for about 15 days, then I switched back to my normal glasses to see how big of a difference there was. By clicking my picture you can be taken to the page that has the complete experiement all in one place.